The HFEA Register - For Donors

 

What is the HFEA Register?
The Human Fertilisation and Embryology Authority (HFEA) regulates fertility treatment in the UK. It has a duty to keep a record of all registrations, treatments and outcomes resulting from assisted reproduction techniques. The collection of records is known as ´the Register'.

You may also wish to see our related pages:

Why is there a Register?
The aim is to give people conceived through donation an opportunity to learn about their genetic background and to help avoid biological relatives inadvertently marrying or having children. The Act came into effect on 1 August 1991.

What information about donors is held on the Register?
Under the 1990 Act, the law stated that the identity of those donating sperm, eggs and/ or embryos must remain confidential (unless it is already known to the individual undergoing treatment).  (See below for details of important change to this law introduced in April 2005)

The following information about donors has been collected for the Register since 1991:

  • Identifying details of all individuals donating at HFEA-licensed clinics
  • Some non-identifying information about donors (see below)
  • Details of patients treated using gametes (sperm or eggs) provided by donors
  • The outcome of fertility treatments ? including the birthday and sex of a donor-conceived child born to a named patient.  

If you provided non-identifying information, such as your physical attributes, a list of your interests or a goodwill message, these details will be available to a person conceived as a result of your donation once they reach the age of 18.

If I donated before April 2005, what information does the Register hold about me?
This depends on when you registered to donate your gametes.  In the early days of the HFEA, you will have been asked for quite brief details about yourself.  Over the years, the volume of non-identifying information collected has grown. This is because of an increasing awareness that some donor-conceived people would find even the smallest pieces of information about their donors of great value.

The non-identifying information routinely collected about donors over recent years and which will be made available to a donor-conceived person when they reach the age of 18 includes :

  • Physical description of donor (height, weight, eye and hair colour, skin colour),
    year and country of the donor's birth
  • Donor's ethnic group
  • Whether the donor had any children
  • Any other details the donor may have chosen to provide, such as their occupation, religion, interests and skills

Additional information collected from July 2004:

  • Donor's parents ethnic group
  • Whether the donor was adopted
  • Donor's marital status
  • How many children the donor already had (if applicable) and the gender of those children;
  • Details of donor screening tests and medical history 
  • A goodwill message.  

From the 1st April 2005, the following identifying information has also been recorded. If you donated before April 2005, and have not re-registered (see below), this information will not be passed on to a donor-conceived person:

  • The donor's name (and their name at birth, if different )
  • Date and place of donor's birth
  • Last known address (or their address recorded at the time of registration)

What if I donated after April 2005?
If you donated from April 2005 onwards, the clinic will have explained that identifying information about you can be given to people conceived from your donation when they reach the age of 18.  In most cases, this will be from 2023 onwards (unless you decide to re-register as an identifiable donor -see below).

A donor-conceived person can ask for the following identifying information about you, as well as the non-identifying information you will also have given:

  • The donor's name (and their name at birth, if different )
  • Date and place of donor's birth
  • Last known address (or their address recorded at the time of registration)

I donated anonymously. Will my identity remain protected? 
Yes. Unless you decide otherwise, no one will discover that you donated sperm, eggs or embryos, and no one can pressure you to reveal personal details.  If at any stage you wish to become identifiable to your donor conceived offspring, you can re-register with the clinic.

Can I change or update the information held about me?
Yes. If you donated in the early nineties, the non-identifying information about you held on the register is likely to be sketchy. Amending it can be tremendously helpful to a donor-conceived person wishing to find out about their genetic origins. 

I donated anonymously because those were the rules at the time. But I'd be happy to be identified.  Can I do this?
Yes.  This is known as ´re-registering'.  You can contact the clinic where you made your donation and let them know that you would like to re-register as an identifiable donor.  If this is impossible (for example, if the clinic has closed), you can write to the HFEA.

Re-registering means you are giving your consent for identifying information to be given to donor-conceived people created using your donation.  This is only possible once they reach the age of 18.

Before re-registering, the clinic will offer you the opportunity to talk with a counsellor, in confidence. You may want to discuss how best to inform family members, such as your spouse or partner, who may not know that you are a donor. You may also want to consider how you might tell your children, if you have any, since they will be half siblings to any person conceived if you donated sperm or eggs (and full genetic siblings if you donated embryos).

I'd like to know about any children I have helped create?
Many donors ? identifiable or not ? want to know if they have helped an infertile couple to have the family they longed for and would like to be able to tell their own children about any genetic half-sibling(s) that may exist.  Please contact the clinic at which you donated, or write to the HFEA.

As a donor, you can be told:

  • Whether children have been born as a result of their donation and if so
  • The number of children born
  • The number of girls and boys
  • The year(s) they were born 


Who is allowed to see the Register?
The law governs who can see the Register. People over the age of 18 (or earlier if they are planning to marry or have children) conceived after August 1991 will be able to contact the HFEA to find out whether they were created using donated sperm, eggs or embryos.   If so, they will be entitled to request any non-identifying information available about the donor(s). They can also be told whether they are related to a person with whom they wish to start a family, or marry.

Information about whether a person has been born as a result of donor treatment can only be given to the individual making a request. It cannot be given to parents, grandparents or anyone else unless a court order has been granted.

It is a criminal offence for HFEA employees or others whose job involves handling information on the Register to release the information to anyone not entitled to it.

What will a donor-conceived person be told about me?
This depends on how much non-identifying information you provided on the registration form.  Parents can ask for non-identifying information about the donor at the clinic where they are having, or have previously had, treatment. Some parents will have told their children about the donor. For more information, see the For parents of donor-conceived children.

The information available to a donor-conceived person from the HFEA Register will vary, again depending on how much non-identifying information you provided at the time and importantly whether you donated after April 2005, or have re-registered as an identifiable donor ? in which case they can receive identifying information about you (see above).

How many children could have been born from my donation?
After 1991, there was a limit of 10 ´live birth events', which meant that 10 couples or individuals could have children from the same donor.

They might have had a single child, twins or triplets at the birth event, and could subsequently apply to use the same donor to have further children, who would be full genetic siblings to the first child(ren). This was allowed even if the limit of 10 live birth events had been reached.

In 2005, the guidance was simplified to allow 10 families to be created from any one donor's gametes.

I donated before 1991, so what information can I get about children conceived from my donation?
The HFEA Register does not contain information on treatments carried out before 1991.  Donors, parents and individuals conceived before that time were not covered by any specific legislation. Donors were usually anonymous, and there was no legal requirement to maintain records.

A register has been established by government-funded voluntary organisation UK DonorLink (external link) to help connect donors and donor-conceived people who wish to make contact. The organisation can potentially bring together donors, offspring and half-siblings using DNA testing.

A pilot voluntary contact register set up to enable people conceived through donated sperm and/or eggs, their donors and half siblings to exchange information and ? where desired ? to contact each other. The register is for anyone over 18 who was conceived with donated sperm or eggs, or who donated in the UK before the Human Fertilisation and Embryology Act came into force in August 1991.

Last updated: 10 September 2007